I Passed Panic Phase On Tuesday

[laynekulwin]

I must confess that I feel a bit foolish feeling the way I do... but then again, feelings are just that - FEELINGS. When my doctor told me the news (that I needed an AVR) I just went numb. Since that I have vacillated up and down emotionally and of late, just seem to accept the fact that it is what it is!

I am brand new to this forum and have taken the time to read many of the posts. That has been most helpful. I also read Adam Pick's book A PATIENT'S GUIDE TO HEART VALVE SURGERY. That was very informative and reassuring for me.

I will probably have my surgery in May. I have an angiogram scheduled for the end of March. I'm keeping my fingers crossed, getting my act together and trying not to dwell on the inevitable.

My biggest hurdle is ferreting out my support group - that seems almost an impossible task as I've traveled all over the place for years - in my work, especially. Now that I've settled down in San Jose, it is still a formidable task to discern whom I might reach out to for support during those trying first few weeks of recovery. I feel as if I'd be imposing on people and I just dread that thought - fear of rejection? of being a royal pain in the rear?

Any suggestions from you all who have traveled this road already are deeply appreciated.

Layne

 

[aussiemember]

Hi Layne,

I haven't had my surgery yet so can't really offer much advice but just wanted to welcome you to the forum All the best as you start to get everything ready for your OHS in May... Jeanne

 

[Phyllis]

Welcome, Layne. I will put you on the calendar for May 8th and you can let us know if that date changes after your angiogram. I'm glad you found us before surgery and that you are also finding peace with the inevitable. You will probably need some help at home for at least a week and preferably two when you get home from the hospital. Some who have not had family or friends who could do that, have arranged to go to a rehab facility for a week or two upon discharge, but I wouldn't worry about imposing upon your friends or family if they offer to help. I'm sure they will be happy to assist you in any way they can. Be sure to check out the pre-surgery thread as there are lots of good threads on what to bring the hospital and how to prepare for homecoming. Best Wishes to you.

 

[Cooker]

My biggest hurdle is ferreting out my support group - that seems almost an impossible task as I've traveled all over the place for years - in my work, especially. Now that I've settled down in San Jose, it is still a formidable task to discern whom I might reach out to for support during those trying first few weeks of recovery. I feel as if I'd be imposing on people and I just dread that thought - fear of rejection? of being a royal pain in the rear?

Any suggestions from you all who have traveled this road already are deeply appreciated.

Layne

Layne....welcome to the zoo.....Take off you hat and coat, have a seat....your are in the right place....Here you will find the support that you need...we area group that can answer your questions and lift you up spiritually and mentally....

Don't short change the people around you.....most people are glad to help and receive far more than they give.....We will be by your side throughout your journey.

 

[hensylee]

Phyllis has given you good recommendations. I agree with her.

You may find that your close friends will be right there to help if you need something. We have had some others who lived alone and managed, albeit it was not easy for them and we do not recommend that at all. You don't say that you live alone but it sounds like it. Check with your doctor's office or the social services director at the hospital about having someone stay with you for a week or so. Blessins.........

 

[Karlynn]

Welcome! I agree with the others - those who are offering help - take them at their word and accept their help. I'm sure you will help them when needed.

 

[CHDDoug]

Welcome...

Welcome...

Welcome Layne. Glad you found the site. It was a huge help for me pre-surgery. I also read Adam Pick's book and found it to be a HUGE help. He's pretty spot-on with the book. As far as help when you get home, I found that I didn't need much help when I got home (6 days post-op). If you have someone that can grocery shop for you and help with some small stuff here and there, that is probably all you need. I found that I could do all the necessities for myself (shower, eat, get in and out of bed/recliner, etc). The 'no driving' is the only bummer, so you'll have to work around that. Other than that, recovery is a piece of cake.

Good luck and keep us posted on your surgery!

 

[netmiff]

post-op prep

post-op prep

I found I could not lift heavy things - and 2L of milk is heavy in your first week or so post-op! - or bend and stretch too much, so my husband left the cereal, bread etc. on the countertop, made sure the milk was poured into managable-sized jugs in the fridge, and that everything I might need was above knee level and so on. I managed wonderfully, mostly on my own (he was out most days). After about 2 weeks home, I had to use public transport (my parents, who had been my drivers, went to a golf tournament out of town). I elected to only shower when husband was home, but that was something that just made us both feel a bit safer (and he has anxiety disorders); I must admit, help with putting on my bra was appreciated for a few weeks (but you won't have that problem) and tieing my shoes up was awkward . . . a little common sense and a little support from friends, and you should be OK, but a back-up plan is a good idea, just in case. At least you have the time to think about it and plan.

 

[Freddie]

Welcome Layne

Don't be afraid of being "a royal pain in the rear". Ask your friends ahead of time......."if need be can I call on you for assistance?" I'm sure someone you know will be more than happy to give you a hand.

Good Luck and take Care

 

[njean]

I must confess that I feel a bit foolish feeling the way I do... but then again, feelings are just that - FEELINGS. When my doctor told me the news (that I needed an AVR) I just went numb. Since that I have vacillated up and down emotionally and of late, just seem to accept the fact that it is what it is!

I am brand new to this forum and have taken the time to read many of the posts. That has been most helpful. I also read Adam Pick's book A PATIENT'S GUIDE TO HEART VALVE SURGERY. That was very informative and reassuring for me.

I will probably have my surgery in May. I have an angiogram scheduled for the end of March. I'm keeping my fingers crossed, getting my act together and trying not to dwell on the inevitable.

My biggest hurdle is ferreting out my support group - that seems almost an impossible task as I've traveled all over the place for years - in my work, especially. Now that I've settled down in San Jose, it is still a formidable task to discern whom I might reach out to for support during those trying first few weeks of recovery. I feel as if I'd be imposing on people and I just dread that thought - fear of rejection? of being a royal pain in the rear?

Any suggestions from you all who have traveled this road already are deeply appreciated.

Layne

My friend, you need to look no further than this forum if support is what you need! We've all been there & we all know the fears & anxieties every one awaiting OHS has gone through so we're here to offer you hope, answers to your questions & hopefully make your waiting time easier. In the meantime, try to stay focus on the fact that you need this surgery because you still have a lot of years ahead of you! Wishing you the best & I will keep you in my prayers!

 

[Jkm7]

So very happy you found us prior to your surgery. Information is always the most comforting IMO Most of us can handle most of what we have to with regard to OHS if we have some idea in advance what to expect.

MY DH is tremendously supportive but is not retired and still very active in his professsion. I have been in my home most of days alone and it has been no problem. I had a friend come in the first three or so days I was home and we both found we were chatting and visiting but I really needed almost no help. It was comforting she was here when I showered and to call on if needed, but the days passed quickly with my walking per hospital instructions 4 times a day; showering; eating; resting; breathing. Before I knew it, DH was home at night and again, the company was wonderful but I truly did not need a lot of help.

I have been cooking our meals (easy things for sure and not my complex recipes but nutritious and satisfying); doing the laundry; I wash, dry and fold and he carries; I wash the dishes and put them away etc

If all goes well for you and hopefully it will, I think you'll be surprised how independent you can be.

Rides to medical appointments is what I needed most.

Good luck. Hang around and let us help you through it.

 

[marie]

As others have pointed out there are some on this site who managed quite well at home without help but I was not one of them. My husband and sons took turns staying with me in the hospital. An advocate is wonderful to have. At home my husband helped me shower, get in the bed, putting on pressure stockings but I am spoiled. LOL If you come home alone make sure you put things at arm's reach and in sizes you can handle. In regards to friend's who want to help I say take all the help you need. My husband was determined to do this alone but what my wonderful friends did was cook us meals and that was a great help. I had one dear friend who didn't listen to my husband and came and helped anyway. She didn't ask just showed up and did what needed to be done. I'm sure others will be along shortly that have stayed alone and managed quite well. As others have stated have someone available to drive you to doctor's appointments.
Welcome to the forum.
Earline
PS Try to keep visitors to a minimum at first

 

[WayneGM]

I can't add more insight to what's already been said so I'll just say welcome to the VR community, Layne. Glad you've joined us.

 

[erhebergen]

Welcome Layne,

I know the way to San Jose... I had my AVR done at Good Sam in SJ back in 1998 by Dr. Henry Fee. He's a great Cardiac Surgeon if you're looking for one. You really can't go wrong in that areas with Stanford near by and so many "heart" hospitals in close proximity.

Regards,
Eric

 

[bvdr]

Welcome, Layne. You now have a support group....us! We can't be there physically to help you but you sure can get the educational and emotional support here. Bend our collective ear when you have a question or you just need to let off some steam. If you have been on your own and lived all over then I think you must be pretty resourceful. You can do a lot to make things easier on yourself the first few weeks by thinking ahead, clearing your calender, shopping in advance, making and freezing your own post-op meals, and many other things. Check into your area resources for rehab facilities. There might be some place you can go for several days if you have no one to stay with you.

Layne, you might want to inquire about the possibility of having minimally invasive surgery for your aortic valve. One of the advantages of this is that you usually are cleared to drive after only a week or so. I'm glad your panic phase is over because now you need to get really informed and get things ready. You can do this! Again, welcome to this group.

 

[ruth]

Hi Layne, I just wanted to welcome you to the forum. Some of us are too far away for physical support but we'll be here in text and in spirit all the way!

Peace,
Ruth

 

[laynekulwin]

I Am Overwhelmed By Your Kindness

I Am Overwhelmed By Your Kindness

I am deeply touched by each and everyone of your comments, suggestions and support. I am sure that over the weeks I will come to truly appreciate and look forward to your continued words of encouragement. Thank you, one and all.

 

[dick0236]

Welcome Layne

Welcome Layne

Do yourself a big favor and put "vr.com" on your computers "Favorites" list.
I spent 39 years huntin' and scratchin' for useful info for valve recipients. I found the information, as well as the support, that I needed on this forum.

My best wishes to you.

 

[kchristian]

The Mental Phase

The Mental Phase

Layne,

I just discovered this group thanks to Debbie and am also becoming active in Mended Hearts at our local hospital. Peer support is so important and meaningful. I recall when I was told (at 53 years old) in 2006 (via phone) that I was going to be referred to a surgeon because I had a 'slight' aneurysm and needed that repaired and the aortic valve replaced. I was having annual echos due to a genetic disorder (bicuspid aortic valve) and knew that 'some day' I would have surgery. Thank goodness my husband was with me as I recall trying to process what I was facing and how I was going to get through it all. I'm sure my face was pale but I managed to ask questions of the cardiologist. My husband always went with me for the annual cardio report with the cardiologist. This was the first time he called our home instead so I knew something much bigger was up. This kind of surgery is a major event in one's life.

I recount the pre-surgical period of my life figuring that there may be parts and pieces that will work for you too. I had been in the waiting room during open heart surgery several times before but had never been center stage. Those weeks leading up to a planned surgery allow for time to prepare your mind and body for the upcoming experience. In most situations that is the only part that you can really control. I updated my family trust, talked to my business partner, announced my planned absense to professional groups I belonged to, took a short family vacation to a mountain resort for a few days, had a Healing Touch massage (and lined up more for my time in the hospital), went through all the testing requested, asked for blood donations (O-), prayed, kept life at an even keel as best I could, spoke with my husband and adult children, paid bills for the upcoming month, canceled a conference I was planning to attend, listened to guided imagery CDs (on preparing for surgery, ICU and recovery), spoke to a medical tech who worked at the hospital I was going to go to (he was present during my surgery) and learned to receive love and live in the moment. Although it was all important, those last 2 were the 'biggies' for me. There are times in life when we are not in 'control' and we must allow others to help us in various ways. Of course they receive the satisfaction of helping/giving and you receive the benefit of their actions (physical and emotional). To live in the moment was a really tough lesson that allowed me to remove deep fear from my being and to enjoy life as it presents itself. I came to realize in those few short weeks that my destiny was my own (my mother, father, 2 grandfathers, and a couple uncles had cardio history that did not dictate my own to-be-written history). My religious beliefs were strengthened too. It was a major changing/growing point in my life. Yes I had to trust in the skills of lots of people before, during and after the scheduled event. And the good news is that they all came thorugh with flying colors!

I now celebrate 2 birthdays. My cardiologist knew exactly what I meant when I told him this during my annual followup. This last year I was 55 on 8/17 and 1 on 8/8. I haven't figured out if I should just add them together, add them together and divide by 2, or just pick the one I feel at the time

Your path will be your own. Each is unique in its own way. If we can help in any way just let us know. We care. We can relate to what you're going through. Thank you for opening yourself up to this group. You are in good hands. May peace fill your heart and mind. Please keep us apprised of your journey.

Warm Hugs......

 

[Phyllis]

Karen,
Welcome to our group and thank you for posting such an informative and caring first post- It will mean a lot to those in the waiting room.